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Tuesday, December 18, 2012

An Open Letter to the Media

“Asperger Syndrome”— That’s what I saw on the news headline in bright, bold red letters on Friday. If I didn’t already know what it was because I have it I probably would have been afraid of it. In the article that followed the autism spectrum wasn’t properly explained and to the uninformed, the only thing to gather was that all things autism were dangerous.

What is being left out of the conversation is that those were Asperger’s, and other autism spectrum disorders, are far more likely to be a victim of a crime than the one committing it. And often times the person on the spectrum will not speak up about it because of communication issues.

What is also being left out of the conversation is perhaps the most important line about the autism spectrum and that is, “If you’ve met one person with autism you’ve only met one person with autism.” It is dangerous and irresponsible to generalize autism like I have heard in the past few days. Each person on the autism spectrum can be radically unique to the next. Myself, I’m a public speaker and yet the next person you meet with Asperger’s may have a difficult time engaging in a one-on-one conversation. I heard one speaker on the news say that ALL people with Asperger’s are great in math. This too is untrue, some can be, and may be amazingly good at it, but others may be more of an abstract thinker and be good in the areas of music and art.

The true problem with generalizing is not for those of us who know we have it now but for those that are undiagnosed. I’m 29 now and got my diagnosis at the age of 20. I didn’t know what it was so I looked it up on the internet and read that, “people with Asperger Syndrome will never have a job, never have friends, and will never be happy.” Sadly, I believed those words and my life was destroyed for over a year as I descended into the deepest abyss of depression you could imagine. However, I discovered writing as a means to express myself and learned that those hideous, hopeless words were a complete lie, but what about those who are getting their diagnosis now? And for younger children, how open will parents be to hearing that their two or three year old has, “Asperger Syndrome.” What will their reaction be? Will it be, “Wait, Asperger’s, isn’t that…”?

To be honest, I have turned off the coverage because I’ve heard too many generalizing facts and doomsday reports on Asperger’s. I know parents of children are worried about the backlash because I’ve been contact by many expressing their fears and you know, if the general public hears the same information over and over it will become fact.

The tipping point for me was when I heard an expert say, “People with Asperger’s have no empathy or emotions.” While it is true that some may experience a lack of empathy, many of us, like myself, have it and on the topic of emotions I think we have more and feel more emotions than those not on the spectrum because it is so hard for us to express how we feel. Also, the world may take it that we have a lack of empathy as we may have a flat affect, meaning you can’t judge how we are feeling by our facial expressions but behind our cold exterior is a world of wondrous thought going on as we try and process the world around us.

My motto is, “understanding is the foundation for hope.” Right now my heart aches for many reasons. The tragedy that occurred is beyond words. Moving forward though, at the way the media has portrayed Asperger Syndrome, what type of image will we have? Will we be feared as monsters? Will the friends that some of us have start to wonder about us? I feel those with Asperger’s have so much potential, but if the chasm of misunderstanding grows, the already difficult experience of growing up will become more difficult. I’ve been thankful the past two months to have spoken to over 5,000 students on the subject of Asperger’s and tolerance but that isn’t even a measurable fraction of the students in America and for some their first introduction to Asperger’s may be this tragedy.

So lost in this all is each person. If we generalize we are doing a disservice to each and every person who lives life on the autism spectrum. Maybe the news, when the time is right, will give the public a better view of the autism spectrum in all its glory, challenge, and mysteries. But above all else I hope the message is relayed that, “If you’ve met one person with autism you’ve only met one person with autism.”

17 comments:

It was VERY clear that the media (at least in the reports I saw) had no real understanding of Asperger's. They did read part of the advocacy group's letter with the quote that people with AS are more likely to be victims of crime than to perpetrate crime, but there was no additional context to the reports that he had Asperger's. Hopefully rather than creating a chasm of misunderstanding, this can instead be a teachable moment and increase the general public's understanding.

Thank you for your Open letter. This is what Everyone should read this.My 11 year old has aspergers and Nothing could be more true than...If you have met one person with Autism, you have only met one person with Autism. The media has clearly reported on something They know Nothing about.Thank you Aaron!

Kathy- a caring grandma of a Aspergers kid.Thank you for that open letter. I'm raising a grandson with Aspergers. He's kind, sweet, loving, and my pride and joy. He hasn't a mean bone in his body. He's even kind to kids that are mean to him. He has trouble communicating his thoughts, has poor handwritting skills, math is a concept he just can't grasp. But at 2 and 3 years old he had every Nascar drivers names, number, make and model of the cars they drove and still does.If he likes the subject he excells. If he has no interest, it's a huge challenge. He loves meteorology, astronomy. If he reads it he memorizes it. He lacks social skills. When we put him with other kids, he always goes off by himself. He has no friends at school. Nobody to sit with at lunch, nobody to walk the halls with. His hearing is sensitive, his phobias overwhelm him. When he's picked on, he's not one to tell us. It always comes out long after the inccident. My husband and I are doing our best to help him, guide him, love him with all our hearts. He will find his way in this world. I hope beause of this tragedy, that they don't isolate him more than he already is. Kids need to learn to be tolerant. I have lost some hope on that issue, maybe with time people will learn what great kids they are. Thanks for posting.

Mother of 2 autistic children, 8 years apart with the same father...1 with asperger's...1 with PDD....Been dealing with the autism spectrum for 15 years...when Nobody knew what Asperger's was!!! My oldest, now 21 yrs old....I have no real relationship with, he lives with his father. Dr Jekyll-Mr Hyde...what I hear from people is, he is such a sweet kid...they don't know his deep inner self. I keep my distance. When he is furious with me...he turns into a person you don't know....scary, the devil in his eye's...has punched me in the head twice over the years and has come at me in an attack mode but restrained by my ex-..who protects him. I keep my distance and as my attorney has told me...I need to watch over my shoulder at all times as some of my family and close friends. I was the one that did all the Dr. Specialists, Me and I am the one with no relationship to the child I gave birth to... do I love him, Absolutely....I'm not saying that all Aspie's are the same, just giving you part of my lifetime experience. My youngest child with PDD is almost 14 and I could have 20 of him...the total opposite of my oldest...sweet, loving, kind, honest and so care free. There was a killing almost 2 yrs ago in my town...husband dead..wife critical but made it...both teachers...her, my French teacher from high school...The son did it. 9 months ago when my son flipped and came after me and slammed my car with my youngest in it...I went to the police and filed a report....also told them...the teachers and the son....That will be me someday!!! I am not saying people with Asperger's are all the same...just giving you my 15 years of experience. God Bless all.....

Aaron I have heard you speak and I have read Finding Kansas! Along with the above this letter is also somethings that everyone should read. I have two children who have a diagnosis of autism and when I heard the first reports regarding the shooter I was terrified about what people will think. Our children face so many stigma's in life and now I fear there will be more looks, comments, segregation. But..Aaron thank you for your words and know you give this Mom hope!

My partner was diagnosed with Asperger's as a child. Sure, his body language and facial expressions may seem cold and motionless, but he is a deeply caring and emotional man, who possesses not only a gift for mathematics, but is also very creative.Please, name and shame the newspaper that published this article. I have a piece of my mind to give to them.Elaine

I was diagnosed with Asperger's shortly before age 50. As I learned what that entailed, so much of my life that never made sense suddenly did so. We're not "normal" as the world views normalcy, but sometimes, we are quite extraordinary in very positive ways. Sadly, the price we pay for those extras can be very high. People who don't know and are quick to judge are the reason we are thought of as lacking empathy, unable to hold jobs and so on.If you could see our "disability" you wouldn't hesitate to make those needed accommodations. But there are many people on the autism spectrum, many who struggle with depression and other problems that other you will never see. Ask the questions that need asking -- we'll all be better off.

My son has it and he is the most wonderful child i know. it is different for everyone with autism. If they have a mean streak at all it is usually due to being bi-polar also. my son is both and when he gets in violent moods he is harmful to himself and not others. for people to find the thing someone has wrong and saying that is why is wrong of them. thank you for ur letter it helps others speak up and makes others think.

Thank you so much for your letter. My son has ASD and I didn't appreciate the media's point of view. My first thought is that Autism will be even more misunderstood than in years past and that now people will be afraid. Your words will have more impact than mine ever could.

I live in Italy . I have a 17 years old son.He wa diagnosed PDD in Toronto when he was 3 and I didn't want to have him labeled no more . He's our son and that's it . He sometimes still cries when he's bullied at school and I would't say he's emotionless because when he cries he can really break one's heart into pieces .

Well done for this text.My son has been diagnosed with autism this year and he is the most loving child.We focus on every little thing he learns or progress and not on the fact that he has a delay on many areas.And thats what makes him even more special for me and my wife,and every sign of love and afection he gives us fill our hearts.We are blessed to have him.Carry on the good work.Thanks for sharing your experience.God bless you!

Hi Aron, Thank you for your open letter to the media - I agree, and thank you for writing so clearly of understanding each person on the spectrum's unique strengths & emotions.Caregivers should be aware of the CIT Program here in St. Louis & St. Charles Counties - Crisis Intervention Team. MANY, of their crisis calls are from caregivers for a person on the Autism spectrum. A CIT officer is trained to deescalate a dangerous situation without anybody getting hurt. If an Autism-spectrum person is missing from home, missing in a crowd - they can start a search immediately. CIT officers have also had training in suicidology & can counsel & take people to a hospital. They follow up afterwards. They can deescalate, get a child into an ambulance for a psychiatric exam, can charge a child with assault, age 17 or adult can be arrested (domestic violence requires an arrest in MO). For ordinance breaking adults are sent to Mental Health Court, and background is evaluated before the court date. Violent individuals are taken to county jail and put in the infirmary where they are isolated from other people arrested. Anyone talking about self-harm will be taken to a hospital for evaluation. My son is 25 now, diagnosed Asperger's & on spectrum as high-functioning Autistic when he was about 13 (before that he was behavior-disordered and language-impaired). He drives and works part-time in a company with a job coach support. We took him to court and became his legal guardians when he was 18, specifying he retain the rights to vote, to drive, and to marry. HE CAN NEVER LEGALLY PURCHASE A GUN. That's part of legal guardianship now. A tragedy to me is that Adam Lanza killed his mother first -- It's clear to me that she did not view him as a threat. She home-schooled, she taught him to use guns competently and safely. No way did she expect him to shoot her, but he did.She did not see that coming . . .Thank you for taking the time to keep up your Blog - I've seen your presentation, read Finding Kansas, and gave copies to several people. Our community is better because of your thoughtful hard work, Aron.Sandy

Who I Am

Hello, my name is Aaron Likens and thanks for visiting my blog. I am the Autism Ambassador for Easter Seals Midwest and also the author of the book "Finding Kansas. My passion in life is to raise the awareness and understanding of the autism spectrum through this blog as well as the many presentations I give. For myself, as much as it is a passion, it is personal because I was given the diagnosis of Asperger's when I was 20. Back then there wasn't much info and I fell into a pit of despair. I stayed there for 15 months but then I eventually discovered myself through writing and now here I am and here you are on my blog. There are well over 1,000 posts on this blog as I started blogging in March of 2010. So whether you're reading today's blog, or are skimming through stories of the past, I hope that your time here gives you a better glimps of what living life on the autism spectrum, or, "other side of the wall" is like. If you do like what you see please follow me on Facebook as that's where I share when I've written a new blog as well as announcing where I will be presenting. Please note that the opinions expressed on this blog are mine and may not be reflective of Easter Seals Midwest.

The Sunglasses Experiment

I ran a sunglasses experiment to judge why eye contact is so difficult. I wore them for about 15 days, then I switched back to my normal glasses to see how big of a difference there was. By clicking my picture you can be taken to the page that has the complete experiement all in one place.

About Me

I am the Autism Ambassador for Easter Seals Midwest and also the author of Finding Kansas: Living and Decoding Asperger's Syndrome. My passion in life is raising awareness of Autism Spectrum Disorders and to help the world understand how the mind of a person on the spectrum works. I can do this because I am on the spectrum (Asperger's).
I was diagnosed at the age of 20 and after the diagnosis a lot of my quirks made sense. I didn't understand who I was though and went into a deep depression. Through this depression though I became very keen on my inner self and I started to write. I wrote and I wrote and before I knew it I wrote a book.
5 years later I am, among other things, giving presentations to police, teachers, and parents and am now starting my quest on making the best blog possible!
The views on this blog are mine and may not be reflective of Touch Point Autism Services.
If you have any questions, or comments, or have an article idea please email me at aaron.likens@yahoo.com.